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My Journey

“Cooking is like love. It should be entered into with abandon or not at all.”~Harriet van Horne

Today is National Celiac Awareness Day – so what better way to celebrate and spread awareness then to share my own story of my gluten-free journey.

I have always been a food lover. I love cooking, trying new foods, recipes and even enjoy baking. I’m much more comfortable with cooking than baking though. The reason is, you don’t have to be extremely precise when cooking, but with baking – you better follow those directions and measure accordingly. Growing up and learning to cook with my Grandmother it was always “a pinch of this” or “a dash of that” – no real measuring going on, plus you could taste along the way where baking you have to (for the most part) wait until you have the finished product out of the oven and keep your fingers crossed that it tastes good. And I was one of those people who would always say – “Thank God I don’t have a food allergy, I have no idea what I would do if I couldn’t eat…”

In June 2008 I was finally diagnosed with havingCeliac Disease. Ever since I was little I had digestion issues and was told I was lactose intolerant and hadirritable bowel syndromeso I did my best to avoid cheese. Mind you I love cheese so my best wasn’t really that great – I continued to eat lasagna, cheese sticks, mozzarella sticks, cheese and crackers, pizza and cheesecake. Is anyone else seeing a pattern here? Well it is something that my doctors have missed all of those years – it wasn’t the cheese that was making me have these issues, it was everything I was eating with the cheese!

I had all the symptoms of a person with lactose intoleranceand irritable bowel syndrome – which is what I think clouded my doctors diagnoses. I was very much on the sever end of the symptoms for both of these. I was always tired (also diagnosed with Chronic Fatigue Syndrome), and at the age of 15 I was diagnosed with Fibromyalgia. I am now 28 so 13 years ago, it was very uncommon for someone my age to be diagnosed with such a thing. I went to at least five different doctors and it was always the same result “Oh, she is just looking for attention” or “There is nothing wrong with you, it is just in your head”. I don’t know what 15-year-old would want to be in that much pain, and trust me if you don’t have this, I hope you never are diagnosed with it. There were many days that I couldn’t get out of bed. Being in high school, that isn’t a good thing – I missed way beyond the max days of school both my junior and senior year. I have been on and off of muscle relaxers ever since. I do my best to stay healthy, exercise and maintain a healthy diet to avoid taking these as much as possible.

Over the past two years since being diagnosed with Celiac Disease I have done quite a bit of reading on the connection of all my previous diagnoses with Celiac Disease – it is pretty amazing that they are all tied together some how. It made me wonder for quite a while how my doctors over the years could have missed this connection. But I am not here to dwell on that, I’m just here to share my journey with you.

Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. If you have celiac disease and eat foods containing gluten, an immune reaction occurs in your small intestine, causing damage to the surface of your small intestine and an inability to absorb certain nutrients.

Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment. This can lead to other illnesses and stunted growth in children.

No treatment can cure celiac disease. However, you can effectively manage celiac disease through changing your diet.

There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as:

Intermittent diarrhea

Abdominal pain

Bloating

Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn’s disease, parasite infections, anemia, skin disorders or a nervous condition.

Celiac disease may also present itself in less obvious ways, including:

Irritability or depression

Anemia

Stomach upset

Joint pain

Muscle cramps

Skin rash

Mouth sores

Dental and bone disorders (such as osteoporosis)

Tingling in the legs and feet (neuropathy)

Some indications of malabsorption that may result from celiac disease include:

Weight loss

Diarrhea

Abdominal cramps, gas and bloating

General weakness and fatigue

Foul-smelling or grayish stools that may be fatty or oily

Stunted growth (in children)

Osteoporosis

Anemia

Another gluten-related condition
Dermatitis herpetiformis is an itchy, blistering skin disease that also stems from gluten intolerance. The rash usually occurs on the elbows, knees and buttocks. Dermatitis herpetiformis can cause significant intestinal damage identical to that of celiac disease. However, it may not produce noticeable digestive symptoms. This disease is treated with a gluten-free diet, in addition to medication to control the rash.

When to see a doctor
If you notice or experience any of the signs or symptoms common to celiac disease, see your doctor. If someone in your family is known to have celiac disease, you may need to be tested.

Seek medical attention for a child who is pale, irritable, fails to grow, and who has a potbelly, flat buttocks and malodorous, bulky stools. Other conditions can cause these same signs and symptoms, so it’s important to talk to your doctor before trying a gluten-free diet.

So with no medicines to try (which I was very excited about, I hate taking pills!) I changed my diet. It wasn’t the easiest of things to do. Like I said before I love food and at first I got really nervous that things wouldn’t taste good. I cleaned out all of my gluten containing food items and brought them to work to give away. When I came back home I realized I had nothing left! It was mind-blowing to me where gluten was actually hiding in these food items. Soy Sauce!? Really!! I went to whole foods and about had a panic attack right in the store when I ever saw the prices of everything. I picked up a few of the basic things and decided that for now I would just eat fresh foods (veggies, fruits, non-marinated meat) and will eventually teach myself how to bake gluten-free. I searched and searched the web to find blogs, articles, recipes etc. The first one I came across and is still one of my favorites is Elana’s Pantry. Reading her site and trying her recipes helped me realized that this isn’t so bad. You can bake and cook gluten-free and it still look, smell and taste wonderful.

I started this blog shortly after being diagnosed for several reasons. To keep track of my journey, my recipes (both created by myself and those that I have adapted to be gluten-free), my experiences and to potentially help others that were in the same boat as myself. It has been an amazing two years. I have learned so much, yet there is so much more I have to learn (for example how to blend flours to bake with). Changing my diet and lifestyle to be gluten-free wasn’t nearly as bad as I was first expecting it to be. I realized I just needed to be creative with my cooking (hence my blog name). There are so many wonderful recipes out there that are naturally gluten-free or are easily adaptable to become gluten-free, you just need to think outside the box a little bit, be creative and realize that somethings aren’t going to look, smell or tastes exactly the same. I love it – even if I could eat gluten again, I don’t think I really would (maybe some french bread though). I have found many great recipes to replace my favorite gluten containing foods. I’m happy, healthy and feel great. Since eating gluten-free my fibromyalgia, chronic fatigue and ibs have been under control. I rarely get flare ups and it is such a wonderful feeling. I’m not saying that this works for everyone but for me this diet has helped in so many wonderful ways!! I don’t have to take my muscle relaxers as much, and for the most part only the weather has affected my fibromyalgia -ahhhhh relief.

I love the huge gluten-free (dairy-free, soy-free, egg-free etc.) community that I have found. Granted I have yet to meet any of them in person their blogs, wisdom, recipes, funny stories, generosity, and kind hearts have helped me on this amazing journey that I am on. I thank you all from the bottom of my heart for being the wonderful people who you are, for sharing your experiences and always sending encouragement along to others.

Along with all of the wonderful gluten-free bloggers out there I have to thank Bryan for being my wonderful taste-tester! Even though he isn’t gluten-free he eats all the gluten-free meals, snacks and baked goods I put in front of him. He is truly amazing and the most wonderful man in the world. I have no idea where I would be without him, he truly is my best friend. (and I am slowly turning him into a foodie).

If you haven’t been tested for Celiac Disease please do so, especially if someone in your family has Celiac Disease!

Carrie – thank you so much. Life is so much better. Eliminate gluten and caffeine and it is the icing on the cake for my celiac and fibro! Your crust is fantastic – we enjoyed the galette last night and both Bryan and I loved it.

Jenny, what an awesome post! Thank you so much for telling your story. Everyone how has celiac or non-celiac gluten issues has their own unique story. Telling them truly helps. I have several friends who have been diagnosed with multiple conditions. One friend has fibromyalgia, rheumatoid arthritis, and MS. Another was diagnosed with lupus and RA. One told me that she overheard the pharmacist say: what’s with these young people coming in with all these autoimmune diseases? Neither has been tested for celiac ever, although they have many, many symptoms of celiac/non-celiac gluten issues. Aaargh. Anyway, I’m so glad that you were diagnosed and are doing well. Some great gfe-type meals you are showing there, too. ;-)

Shirley,
Thank you. It is so hard some days to get it all down into words. There were so many visits, and countless tests for Lupus over the years (I was always tired, my weight was always up and down and I would loose handfuls of hair at a time-still do).

My family has history of rheumatoid arthritis, fibromyalgia, ibs, crohn’s and a few other things and no one will get tested for CD. It can be a little frustrating but I can’t force them to do it.

Thank you for all your encouragement and we will have our skype session soon :)

So sorry that it took so long for doctors to figure out what was ailing you. I am especially heartbroken that you, and so many others, have been told your illness is imaginary. Although I have not been diagnosed with celiac disease I’ve had health issues that have disappeared when gluten, dairy, and eggs were eliminated from my diet. I never look back and this lifestyle gets easier every day. I am happy to feel healthy and energized and normal once more. Thanks for sharing your story!

Jenny,
I had symptoms for 30 years before a doctor finally diagnosed me. I lost my first child to premature birth, had muscle pains, bruised easily, digestive problems all my life, depression, panic disorder, anemia, thyroid disorder, osteoporosis, gas, bloating, mouth sores, etc. When I was diagnosed and started learning about this disease, I did a checklist of 60 symptoms. I had 45 of them. It has been quite a ride these last 18 months but I keep forging ahead. My daughter and sister refuse to be tested. That makes me sad, especially for my sister, since she has Chronic Fatigue Syndrome and Fibromyalgia as well as a neurological disorder. I am at the stage in baking of mastering pie crust and I almost have it down. My husband willingly went gluten free along with me and loves my baked goods.

Thank you for your comment and for sharing your story with me. I can relate with family members who refuse to be tested, however you can’t force them but you can always show them by example and maybe just maybe they will see how much your life has improved and they will decide to get tested.

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